Congratulations on the birth of your baby! Although everything may not be as you expected, or wished for, you are not alone and will find lots of support as you and your family care for your little one and help him or her grow and learn.
Down syndrome is the most common chromosomal abnormality in human babies. Normally, the nucleus of each cell of a baby's body contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when some or all of a person's cells have an extra full or partial copy of chromosome 21. The exact reason why this occurs is not yet known.
Breastfeeding can be an important step in the early months and years of your baby's life.
Breastfeeding helped with my bonding to James initially when my world was turned upside down by his arrival.
The extent to which children are affected by Down syndrome varies widely. These children achieve the milestones of child development, but generally a little more slowly. If you have just discovered that your baby has Down syndrome, you may be experiencing mixed emotions. This is very natural as you wonder what lies ahead for you and your baby.
Each Australian state and territory has a branch of the Down Syndrome Association (see below for details). They may be able to supply you with details of local support groups for parents. Many people find this contact very helpful. Your medical adviser will also be able to provide you with information about access to early intervention programs in your area.
The best solution is to talk to other mums who have actually experienced your situation.
The importance of breastfeeding
Breastmilk is nature's food for all babies. Breastfeeding your baby is much more than nutrition. It provides food, comfort and stimulation of all of baby's senses.
Babies with Down syndrome have an increased risk of infection, particularly respiratory infections1 Your breastmilk contains anti-infective factors including antibodies against germs that you and your baby are exposed to.
Babies with Down syndrome often have low muscle tone. The muscles of your baby's lips, tongue and face are all toned and strengthened by breastfeeding2 In these ways, breastfeeding helps prepare your baby for eating other foods and for speech development3.
Babies with Down syndrome are more likely to be born prematurely. The Australian Breastfeeding Association (ABA) has a booklet, Breastfeeding: your premature baby, which contains detailed and up-to-date information, plus mothers' comments and stories, photos and suggestions. This booklet can be purchased from the Australian Breastfeeding Association.
If your baby has difficulties breastfeeding at first, persistence and time will often help him (and you) to learn. Many babies need extra help to breastfeed. Mums of babies who are having difficulty learning to breastfeed are encouraged to express and feed baby breastmilk, while teaching baby with the help of a skilled lactation consultant.
I was encouraged by the Early Intervention Centre to breastfeed because it helps with lip closure and can discourage tongue thrusting as the child gets older.
A good knowledge of how breastfeeding works will help you establish breastfeeding more easily. The ABA has a booklet, Breastfeeding: your baby with Down syndrome, which contains detailed and up-to-date information, plus mothers' comments and stories, photos and suggestions. This booklet can be purchased from the Australian Breastfeeding Association. There are also further reading suggestions at the end of this page.
You may find that it is very helpful to contact an ABA counsellor, a lactation consultant or your child health nurse. Maternity units in many large hospitals employ lactation consultants, while others work in private practice. As well as supporting you as you and your baby learn to breastfeed, they may be able to put you in contact with another mother who has breastfed a baby like yours. The following hints are extra to the basic breastfeeding information available in ABA’s booklet Breastfeeding: an introduction and aim to give you some extra help with your baby.
Babies with Down syndrome tend to have low muscle tone and so may have trouble getting their mouth around the nipple and attaching correctly to the breast4 Some babies may also have trouble coordinating their sucking, swallowing and breathing and may gulp as they feed. They may get less milk for their efforts and they often get tired quickly. This can and will improve with time and patience. Breastfeeding itself will improve your baby's muscle strength, which will help compensate for the low tone. As baby gets stronger and learns to breastfeed more effectively, he will be able to drink more milk.
It is important that you make sure baby is getting enough milk. Signs of this include:
At least five heavily-wet disposable nappies, or six pale, very wet cloth nappies in 24 hours
At least 3 soft or runny bowel motions every 24 hours. Babies older than 6 weeks may have fewer bowel motions.
Good skin tone. (If you gently ‘pinch’ his skin, does it spring back into place?)
Some growth in weight, head circumference and length. Note that there are special growth charts for babies with Down syndrome (details at end of article).
If you are worried about any of these, see your medical adviser immediately.
Attaching your baby to your breast
Start your milk flowing before you put your baby to the breast, so that she will not have to spend energy sucking with little result. Gentle hand expressing, rolling your nipple between your thumb and forefinger, gentle massage and perhaps a warm face washer on the breast will encourage your milk to let down and also soften the areola to make it easier for her to attach. It is important that your baby is well positioned at your breast and that her body is well supported. If she uses as little energy as possible to hold her head and neck up, this will allow her to use her energy for growing. You can use pillows to hold her up high enough so that her mouth is level with your nipple. Using an extra pillow to raise her bottom to near the level of her head may help if low muscle tone is causing sucking problems.
In the early weeks Tamsyn would make gaspy, choky noises during feeds. After some trial and error, a more upright feeding position seemed to minimise this.
You can hold your baby lying on her side across your lap, her chest facing yours, her lower arm around your waist, so that she does not have to turn her head to grasp the nipple. Some mothers use a sling to hold their baby's body in a C-shape keeping her head and bottom tucked in.
Alternatively, you may like to use the 'underarm hold'. Put a pillow at your side and another pillow across it and your lap. Rest your baby's bottom on the first pillow and support her back on your forearm while you cradle her head in your hand. You can try different feeding positions, until you find one that suits your baby.
Your baby may also be helped if you support your breast and her chin while she feeds. Cup your hand under your breast, then slide it forward so that three fingers support your breast. Make a U-shape with your thumb and first finger and support your baby's jaw in that U. This is called the Dancer Hand position.
Human babies, including those with Down syndrome, are born with the instinctive knowledge and ability to get themselves to their mother's breast and to attach themselves correctly, with their mother's support. Spending one-on-one, skin-to-skin time with your baby when you are learning to put her to the breast will help to allow these 'baby-led attachment' instincts to work. If you get the chance, you may like to try this technique (as described in this article) with your baby, as you and she are learning to breastfeed.
If your baby is having trouble sucking correctly, contact a lactation consultant, child health nurse, ABA breastfeeding counsellor or your medical adviser. There are techniques such as cup-feeding and aids such as nipple shields, which may be helpful.
Breastfeeding your baby may not be easy at first, but as she grows she will become stronger and more able to feed effectively. Make use of all the support services available including your local Australian Breastfeeding Association counsellor.
I fed Jack for about 2 years. He weaned himself with a little encouragement from me, but it was a tranquil weaning and I remember well the last feed. I cried because, as I looked down at his little face, I knew I would never breastfeed another baby. I never felt any rejection for him and love him as much as my normal children. Whether this is because of the bonding breastfeeding is responsible for, I don't know, but I am willing to believe it could be so.
The fact that I was able to breastfeed my exceptional baby in many ways helped me to come to terms with the whole situation to a certain degree. It helped bring everything back into equilibrium again.
I would like to say that, in a mother's eyes, the imperfection fades and the child shines through and you see that, after all, he is a real little human being. Jack is loved by all the family.
Breastfeeding: your baby with Down syndrome booklet
Breastfeeding: your baby with Down Syndrome uses practical information from research and from mothers’ experiences in breastfeeding babies with Down Syndrome.
Pisacane, A., Toscano, E., Pirri, I., et al (2003), Down syndrome and breastfeeding. Acta Paediar 92(12),1479–1481.
Dowling, D., Danner, S., Coffey, P., Wellman, L. (2007), March of Dimes Defects Foundation. Breastfeeding the infant with special needs. New York: March of Dimes Foundation.
Buckley, S. (2000), Speech and language development for individuals with Down Syndrome – an overview. Hampshire: The Down Syndrome Education Trust.
Thomas, J., Marinelli, K.A., Hennessy, M. (2007), Academy of Breastfeeding Medicine Protocol Committee. Breastfeeding the hypotonic infant. Breastfeeding Med 2(2),112–118.
Down syndrome associations
National - Down Syndrome Australia
18/71 Victoria Crescent Abbotsford VIC 3067
VIC – Down Syndrome VIC
18/71 Victoria Crescent Abbotsford VIC 3067
Tel: 1300 658 873
NSW - Down Syndrome NSW
PO Box 107, Northmead NSW 2152
7 Deed Place, Northmead NSW 2152
Tel: (02) 9841 4444
QLD - Down Syndrome Association QLD
PO Box 3223 Stafford QLD 4053
Tel: (07) 3356 6655
SA - Down Syndrome SA
Level 1 59–61 Grange Road Welland SA 5007
Tel. 08 8245 4600
NT - Down Syndrome Association NT
PO Box 41545 Casuarina NT 0811
Tel: (08) 8985 6222
TAS - Down Syndrome Association TAS
PO Box 1157 Devonport TAS 7310
Phone: 1300 592 050
ACT – ACT Down Syndrome Association
PO Box 717, Mawson 2607
Tel: (02) 6290 0656
WA - Down Syndrome Association WA
Suite 3 Peer House 2 Canning Highway South Perth
PO Box 338 Bentley WA 6982
Tel: (08) 9368 4002 Toll free: 1800 623 544
Growth Charts for Children with Down Syndrome. 1 Month to 18 Years of Age, Cronk, C., Crocker, K., Pueschel, S., Shea, A., Zackai, E., Pickens, G., Reed, R. Pediatrics. Volume 81. No. 1 January 1988. Available at: www.growthcharts.com/charts/DS/charts.htm These growth charts are the same as those used by the Royal Children’s Hospital. See: http://www.rch.org.au/links/Growth_Charts_for_Down_Syndrome/
European study: Growth charts for Down's syndrome from birth to 18 years of age, Myrelid, A., Gustafsson, J., Ollars, B., Anneren, G. Archives of Disease in Childhood. Volume 87. pp 97–103 2002. Available at: www.adc.bmj.com/cgi/reprint/87/2/97
An interactive growth chart: medcalc.com/growth/
Please contact the Australian Breastfeeding Association for further details about our books and booklets.
Breastfeeding ... naturally, (3rd Ed), Australian Breastfeeding Association
Breastfeeding: your baby with Down syndrome
Breastfeeding: an introduction
Breastfeeding your premature baby
Breastfeeding: breast and nipple care
Breastfeeding: and your supply
Breastfeeding: expressing and storing breastmilk
Breastfeeding: twins, triplets and more
Breastfeeding: when your baby refuses the breast
Breastfeeding: and family foods
Breastfeeding: diet, exercise, sex and more
© Australian Breastfeeding Association Reviewed October 2015